Hidden toll of DES

Wednesday

Caitlin McCarthy could only recall hearing about DES as a teenager. She vaguely remembered that a fellow high school student had been exposed in the womb.

She thinks about that girl a lot now, years later, especially after undergoing a specialized gynecological exam in Boston when an astute doctor noticed something that raised a red flag. Her mother was in the waiting room, concerned about what was causing abnormal, possibly precancerous, symptoms in her then-35-year-old daughter.

The doctor called medical students in to have a look. Then he asked Ms. McCarthy's mother if she was given diethylstilbestrol, a synthetic form of estrogen, more commonly known as DES, while pregnant.

No, she had not. But she might have been given something, perhaps called "prenatal vitamins," for abnormal bleeding during the pregnancy.

The doctor asked them both to come into his office.

"It was like a scene from 'Poltergeist' - slowly walking down a long corridor," said Ms. McCarthy, who, besides teaching English at Worcester Technical High School, is a screenwriter who wrote a scientific drama called "Wonder Drug" about DES.

As it turned out, her mother had taken DES, a drug given to pregnant women to prevent miscarriages. The synthetic estrogen went by lots of different names since it was first prescribed in 1938, and it was often bundled with other compounds, including food.

Ironically, it was for years marketed as a supplement to insure a healthy pregnancy.

Ms. McCarthy, 40, was born in 1970, two years before the U.S. Food and Drug Administration issued an advisory against the use of DES in pregnancy because it can cause cancer and fertility problems in daughters whose mothers took it.

But she did not find out about her mother's use of DES until 2005.

"That's what makes it so appalling. How can you not know for so long that you have been exposed to a toxic drug?" she said.

This year marks the 40th anniversary of the grim discovery of DES-linked cancer, made by Dr. Arthur L. Herbst, a gynecologist at Massachusetts General Hospital.

This week has been proclaimed DES Awareness Week in Massachusetts.

According to the U.S. Centers for Disease Control and Prevention, an estimated 5 million to 10 million people were exposed to DES between 1938 and 1971.

Dr. Herbst, who in 1971 published a landmark paper in the New England Journal of Medicine about the dangers of DES, connected the dots after learning of a cluster of cases of clear cell carcinoma, a rare vaginal cancer usually seen in older women, in eight young Boston women. Their mothers had all been given DES while pregnant.

The youngest women who were exposed in utero are now hitting 40, and it has been 40 years since Dr. Herbst's findings created a media maelstrom. While there are specific changes and abnormalities associated with DES exposure, detecting them - or even suspecting them - requires a more detailed exam and information from the patient, especially during pregnancy, because ectopic and high-risk pregnancies are possible.

Yearly mammograms, PAP tests, and internal exams are recommended. Clear cell carcinoma, the rare vaginal cancer associated with DES, has been found in girls as young as 8.

Ms. McCarthy, who so far has had no serious health effects from her DES exposure, said she was told the odds of her losing a child if she became pregnant are high. She has twice-a-year gynecological exams and yearly mammograms.

"It's always in the back of my mind: 'Is this going to be the year I get the bad news?' It's like a medical guillotine," she said.

Concerned that worries about the drug are fading as the years pass prompted Ms. McCarthy to become an activist.

"Taking charge of my situation has made it more bearable," she said. "And this needed championing. I could not believe the media was not paying attention, and doctors were not paying attention."

Dr. Herbst credits activists with the establishment of a tumor registry for clear cell carcinoma patients, and for lobbying Congress throughout the years to keep research going.

A DES daughter has a one in 1,000 risk of developing clear cell carcinoma, about 40 times that of a non-exposed women.

Ms. McCarthy, who spoke at a DES symposium in May at Mass General, is working with Sens. John F. Kerry and Scott Brown to ask the FDA to apologize for not thoroughly investigating the health effects of the drug, or at least acknowledging that there was a problem.

"The mothers are not to blame for this," she said. "If you're pregnant and you are told by your doctor to take something. You do it. You want to believe."

Nor does she blame the inventor, Sir Charles Dodd, a British researcher who published the formula for diethylstilbestrol in 1938 but did not patent it.

His formula was quickly reproduced by hundreds of pharmaceutical and other companies, according to Susan E. Bell, a professor of sociology at Bowdoin College in Maine.

Ms. Bell, who has published several articles about DES, and a book, "DES Daughters," said it was lauded at the time because it could be taken in pill form, rather than with painful and costly injections, and was thought to be useful in threatened miscarriages or for women who had bleeding during pregnancy, or for pregnant women with diabetes.

It was given for other conditions, such as menopause and prostate cancer, through the 1900s; and to pregnant women in other countries in the 1980s, she said.

Ms. Bell was working at a women's health clinic in Boston in the 1970s when she became interested in DES, particularly since Boston was a hotbed for its use because of all the medical research institutions in the city.

"There were a lot of lawsuits at the time, and I was interested in the impact it had on the people who used it. I really wanted to know what it was like to be a DES daughter."

Dr. Machelle M. Seibel, a professor of obstetrics and gynecology at the University of Massachusetts Medical School in Worcester, said DES was extremely prevalent in the 1950s and 1960s, and likened it to an additive such as folic acid today. It was found in cereal, cosmetics and vitamin supplements, he said.

However, he is not certain about the widespread scare it caused, pointing out that most of its effects are anatomical abnormalities in the female reproductive system, such as T-shaped uteruses and hooded cervixes. Dr. Seibel said those are easily diagnosed with uterine dye tests.

But he cautioned DES daughters to get yearly PAP tests.

"Twenty years later, we found non-lethal impacts, and a very small percentage of cancers," he said, although he acknowledged that the anatomical differences can cause fertility problems.

Also, he said, there are some abnormalities in sperm production in men whose mothers took DES.

Dr. Seibel said a weaker form of DES can be quite effective in hormone-related menopause problems and to help with fertility before conception. It has been withdrawn from the U.S. market.

There are some concerns that the third generation, the grandchildren of DES mothers, could face health problems. Two recent studies on mice suggest a slight increase in reproductive cancers. Dr. Seibel said he sees no link beyond babies born to mothers who took DES.

Never miss a story

Choose the plan that's right for you.
Digital access or digital and print delivery.